HW Survey of ED after Surgery

For those of us who have forgotten Golan's history, here is the link to his first thread: www.healingwell.com/community/default.aspx?f=35&m=3145436&g=3145513#m3145513

Golan, you received a lot of great advice on that thread and hopefully you are considering it. I was not a surgery patient but after 6 years on this forum and reading numerous studies, I think I can give you some response to your questions.

1. What is the absolute best case I could end up with after RP (put a different way, is there any chance at all I could get back to they way I am now)?

Best case scenario is a return to full sexual function with no ejaculate. Davidg is one of our young members who has this result and perhaps he will chime in on this thread.

2. Based on my age and current sexual function, what is the crowd sourced expectation of things after surgery?

General statistics of RP patients would say they have a 50% chance of having ED. With your age and history, assuming you choose a rock star surgeon, my personal guess would be that your chances of full sexual recovery are 80%+. Of course, remember I'm just some internet yahoo and am not a doctor.

3. And what about the benefits? I do spend a good deal of my time (too much I feel) thinking about sex and acting on it. Maybe if I had changes to my sexual function I would not fixate so much on it? Or is it the worst case, constant thinking about sex and then problems implementing it?

I can't begin to comment on this one.

As an addendum, I'll just suggest that you get multiple opinions from non-surgeons as well before you make your final decision.

Good luck,

Jim

I am 58 and was 100 % ED for 2 1/2 months after my RP surgery. It did scare me because I never had any ED problems before the surgery. I was expecting to recover faster and was scared it was going to be permanent. After 2 1/2 months I have 90% erections again - and continuing to improving slowly, and thinking I may try to go pad free one of these days after wearing only a single pda for the past 2 months.

With GS6 I would NOT rush into surgery and take your time considering less invasive treatment(s) If you do opt for surgery, get a very experience surgeon, as I did.

Golan - forgot one thing. You asked if you will be able to get back to the way you are now, the answer is "NO". If you have surgery you will have dry orgasms the rest of your life and unless you do something about it now, won't be able to have more kids (my only regret btw although my wife,wife #1, wouldn't dream of more). So I suspect that with your age, fitness, assuming disease location allows for it, in the hands of a superstar you would be just fine with sexual recovery, but it won't be exactly the same never will.

As for you being a horn dog. we're guys, we all are. I've been shocked to see some guys my dad's age focus only on that and wish i had never gone there. I thought that issue became less and less important as we aged, apparently not! Anyway, look, bottom line, you're looking for that release/orgasm. You could have that multiple times a day even if limp. Sure, not as much satisfaction, but that need for release would still be accomplished.

Golan - A good site for such questions is franktalk.org. Although again, I think you will encounter people there who are working through issues/problems and it will not be representative of those who move on without issues in most cases (I suspect).

Here are the gory details as they pertained to me.

not a glimpse of erection while catheter was in, and thank God for that.

Once Cath was out, which was 7 days post surgery, I was given script for ED pills and told to start them 2-3 weeks later and that I should give my urethra a little time to heal first. It does feel tight at that juncture, like a guitar string ready to snap. Some docs advise on starting earlier. I was glad to oblige the advise on my doc and his team.

As I recall, at one month post surgery, I tested the pills and immediately got a full working erection and happily had sex with my wife. It was a relief and there wa sno looking back from there on out. We're talking a rehab regimen that reminded us of our days in college when we shared her RA double room. This time was actually good for our relationship.

At that stage, I needed pills for an erection but this soon changed. The pills are fun in that they make you 18 again, but the side effects are a drag. With Viagra my TV turned into Studio 54, Cialis, the 39 hour hour 20mg one gave me aches like growing pains and a bit of a headache. Manageable, but not great. This is why I stopped taking the pills about 18 months post surgery since I didn't need them anymore anyway and also didn't need to feel 18 again. But the pills definitely worked and helped in the very important rehab program. A program which in the words of my nurse simply involved doing it in company or alone as often as possible to keep that blood flowing and to keep the spirits up.

One major major difference, especially early on, was the new mechanical nature of the process. Looking at my wife and picturing her with my secretary no longer worked. I lost all mind power. Getting me "up" involved a workflow akin to getting machinery in the industrial revolution to work and keep working. So that kind of took the spontaneous element out of it and also messed with timing etc. There was this fear of an imminent deflating issue during sex. This never happened, but the fear did condition "strategy". You know, you'd tell yourself "slow down" but your instincts would tell you to keep going full steam. But this too changed within months and I was able to get back to normal. By normal, I do not mean what I was at 16-18 when I'd get an erection if the wind blew, but still, close to what most men in mid 40s might expect.

Orgasms - They're dry. You come like a girl. My wife prefers them. You can even enjoy some acts from starting point to the finish line now. Personally, I miss the old option. I think there is something very sexual about that act for us men. But the biggest surprise was orgasm intensity. I am not crapping you, the intensity changes (have heard many men explain this). For me it's far more intense. I remember askign my urologist on my first post PCa discovery if orgasms would be as good and he flatly said "no, they won't be as good". I was perfectly willing to live with that, gave it nice and good rational thought just as the advocates here would expect. Anyway, my urologist was wrong. My first post surgery orgasm was a shock, and I mean that literally. Shock waves that were far more intense and lasted longer. I actually looked at my wife right after and said "what the F was that?" In explaining it to here, she said it sounded like how women come.

I have not taken a pill in a very long time, they're sitting expired in my draw but I don't need them and don't want to deal with the side effects. The side effects diminished when I took them as a routine btw.

Anyway, I think I covered it all. You wanted graphic, there it is. This was just my personal experience and should not be considered a scientific study or true of all recoveries, good or bad.

There are professionals who deal with post treatment ED and incontinece issues, you might want to contact one to discuss what he/she thinks.

ps - no shortening of penis. Again, speak to the guys you interview. I learned that if you use it and rehab it any signs of atrophy and potential shortening are avoided. My nurse, on post surgery interviews while they collected data about my recovery for office statistics asked about it and when I confirmed I had none he explained the technique used by my surgeon to further minimize the potential for shortening. Don't remember details, but something about how they re-attached urethra to bladder.

I can think of some great reasons to come to Denver these days. I understand college applications to universities in Colorado are up 30% from last year.

Ziggy9 said...
You want a far less invasive treatment? Here's another option.

http://www.precisionprostatecare.com/

Interesting, thanks for the link.

Dr Bahn also does focal cryo in S. Cal: pioa.org/about-prostate-cancer/expert-treatment/focal-cryotheraphy/
Dr Bahn said my tumor was too close to the external sphincter for any focal treatments.

I also agree that you much rather have ED issues than to have inconntenace it is way worse than not being able to have an erection I am 9 months post op and still leak almost as much as I did two months out!!!

HCV said...
If you have a relationship that is very sexual I would stay away from surgery.

...or if you are hoping to find one. You haven't told us if you are married or otherwise attached, or are a single on the prowl. The dating scene can he quite a problem after prostate surgery.

note to my wife: This information is hearsay -- stuff I have heard. I have no first hand experience with post-RP dating, and I haven't been "on the prowl" since I landed you.

Golan_Trevize said...


I have a follow up with the urologist who did the biopsy and he strongly recommends RP. I'm going to meet with another urologist next week to get a second opinion. I'm hoping to decide on a course of action in the next 2-3 weeks.

Golan, if you keep asking the question of urologists there is a high likelihood you'll get the same answer. Many of us recommend you get opinions from a variety of disciplines so you get a well rounded story.

Jim

RCS said...
Tudpock is spot on .... if you ask a urologist what to do with a G6 he'll probably say DaVinci. If you ask a radiologist what to do with a G6 he'll probably say radiate it.

I was a G6 and opted for surgery and have been pretty happy with the results ..... however, based on what I have learned over the past 6 years I wish I would have had the guts to try AS ... in hindsight it was pretty stupid treating a G6 early on.

There is a saying that covers a risk in asking a surgeon if you should have surgery, especially when he will be doing the surgery. Or even in getting second opinions from his friends or partners:
"If a man has a hammer, everything looks like a nail". Especially if the man makes 95% of his living by using that hammer. I'm sure there are exceptions, but human nature being what it is, the possibility of bias should always be considered.

I was 56 when I had my non-nerve sparing open surgery. Full ED was forecast. It never happened. My left nerves were cut out, but my right side due to surgical difficulties, was left intact, but noted "damaged" on the surgical report.

I never experienced any ED, from 2008 to now, none. I was having full errections while still on the catheter (though my original cath experience lasted 63 days).

I have never used any ED meds, no pumps, no injections.

Sexually, I work as well, if not better, than pre-surgery, except for the "dry" component.

More of a miracle case, even my surgeon wouldn't take credit, and he was totally surprised by my lack of ED, especially having only one damaged nerve bundle in place.

So things like this can happen. There are a handful of other men here, cant' remember their names, that also reported no ED post surgery, but they are few and far between.

Good luck,

David in SC

Mike,

Trying to remember your stats. Know you had robotic, but did you have nerve sparing or non-nerve sparing op?